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Rock bottom

So I thought being in hospital was bad and the shock of having something that I didn’t realise I had was devastating but since then, things have gotten slightly more complicated.

I returned to work last week in the hope that I was fully recovered, I knew I didn’t have as much energy as before but I was desperate to return anyway and see all of my colleagues and the kids as now I have a brand new job in a school I love!

7 days later, I’m off again with chronic mouth and throat ulcers, fatigue and just generally feeling awful. I can barely eat or talk, the two things I love doing the most!

Recently I saw a Rhuematologist and she was as useful as chocolate teapot! So dismissive and rude, she didn’t want to listen to me or my boyfriend saying how I felt. She also contradicted herself a lot and concluded the appointment by saying ‘Behçet’s is not something that can be diagnosed anyway and no one knows much about this’, which obviously fills me with a lot of hope! (Sarcasm in case you didn’t get that 😀)

So here I am three weeks after coming out of hospital, having ulcers in all sorts of places which I won’t describe in detail and feeling fairly miserable. I just want to be a normal 30 year old, committed to my job and able to at least go out and about a little bit but I just don’t yet have the energy.

I have recently been drinking more Guinness as I’ve heard that it contains lots of iron, so it’s worth a go isn’t it!? (I keep telling myself that!)

When you’re off sick from work in any job you always feel the ‘guilt’. I have to say you teachers will understand this completely, not just do we feel that guilt for our colleagues we also feel it for the kids and when you return to work they are so pleased to see you which is amazing, yet they do make me feel guilty too. I don’t want them to miss out on a good education and I want to make sure I can be the healthiest teacher possible.

So my latest battle is getting referred to a Behçet’s centre of excellence which is based in Whitechapel in London. There’s three of these over the country and they are completely NHS funded, amazing right!? So I went to the GP this morning full of hope, he quickly told me he was a locum doctor who cannot refer me and my heart broke. As I sat there in the chair, I cried my eyes out in desperation of some help or just someone to listen and say, don’t worry we will sort this. Instead his exact words to me were ‘I know nothing about this disease but there won’t be a centre of excellence for it’…. I was left speechless and emotional.

So I will not give up on my battle to be referred! I know doctors train for years and years and I love and support the NHS so much, they have undertaken some life changing surgery on my body throughout the years. I don’t think there’s a body part or limb that hasn’t been under the knife for corrective surgery so I do trust doctors entirely and I respect them. But then I know from having been diagnosed with one rare condition already that doctors do not always know the answers, and why should they!? No one knows everything.

All I want, is someone to sit down with me and say we will help you. If this is or isn’t Behçet’s then so be it but I want an answer as to why I am so poorly lately, why am I getting these batches of ulcers all over my body, why do my eyes swell up and my bones hurt and I have a constant headache and tummy pains- there HAS to be a reason.

You know your own body better than anyone and we all have that instinct to know when something is not right. I do not want to be sat here in a years time still not knowing what is wrong with me, not knowing how to manage it or when will I be normal.

Again, I am not writing this blog for you to feel sorry for me or pity me it’s just mainly and selfishly to write down how I feel and to help myself rationalise everything rather than sit here crying about it. I want to be pro active and raise awareness and get people talking about rare diseases, the invisible ones can be just as bad.

When I feel better, the thing I want to do the most is be able to go and see friends, make plans and go out and go away with Lewis as we both massively need a break! Life can throw rubbish at you but it’s how you deal with it and I couldn’t ask for a better best friend, boyfriend and soul mate to go through it with!

What are the chances

Since birth I have always been in and out of hospital for various different things to do with my first rare disease, diagnosed at birth with Klippel Trenaunay. This rare condition is one that effects the bones, veins and soft tissue and causes malformations, so throughout my life I have had some of the most amazing, clever and committed doctors operate on me to ‘sort me out’ and try to help me lead as normal and pain free life as possible.

The main effected area now is my left leg, the veins basically don’t pump the blood around properly which makes my leg look like this. I used to hide my leek away and sometimes some people make comments or ask questions but I have got used to it now. I have to wear class three compression stockings full time, comfy shoes and cannot walk as far as I should be able to but hey ho it is part of me and even though some days it is excruciating you do learn to live with the pain.

I remember as a child being paid to be examined in an open theatre full of junior doctors from Oxford University as it was something that they only saw in books and studies. Back then I thought it was the coolest thing ever and with the money that I received I bought me and my sister a pair of roller boots each, so we could have more fun out playing on the street. I was never disabled or unable to live like a normal child thankfully, I did everything that everybody else did and this continued on to my teenage years and to uni!

I have always been in and out of hospital but I never used to get ground down about all the ailments and being ‘out of action’ for a few weeks as I used to enjoy the toys, presents, cards and games that all the adults used to give you. Then the older you get you realise the more you miss out on! Such as wine drinking, being on medication which makes you feel constantly tired and having time off sick from work, which granted a lot of the time whilst at work I want to be curled up in bed. The reality is when you are curled up in bed it is lonely and boring and you soon get down.

Recently I was admitted to hospital with severe pain, on a Saturday morning after having a sleepless night screaming and crying we ended up phoning 111 and getting an out of hours appointment. We had plans that Saturday and I was looking forward to seeing friends we haven’t seen for a long time and having a good drink like we usually do on a Saturday night, so we popped to the hospital expecting to be in and out and quickly we realised that we were not going to be going far.

Five days later I was still there and it was confirmed. Rare condition number two, Behçet’s disease- what are the chances?

Feeling gloomy, in a lot of pain and sad beyond belief I laid there and cried in front of my mum and my boyfriend Lewis. It feels like the biggest thing you have ever been told and yet at the back of my mind I knew this could be worse, so so much worse. It’s just the realisation and trying to process that I have a life long condition, probably something I’ve always had but now this is real and it’s made me really poorly. Will life ever be the same?

Earlier this year me and my boyfriend had bought a house, we love it in our new house but it needed a lot of work doing to it when we first moved in and the previous owners were not exactly clean. A week down the line my eyes became red and swollen and I again ended up in A&E and on steroids which quickly got rid of the reaction which at the time we thought was an allergic reaction to the amount of dust and dog hair that had accumulated in our never been cleaned new home! With it being a running joke at work that I was allergic to my new home this went on and we never thought anything of it.

I have always suffered with mouth ulcers and have never been the type of person who can burn the candle at both ends, if I do I will quickly know about it and life has always been like that for me. So really now I’ve had a good week to take this all in, rest up and learn a bit more about Behçets the more I realise I have always lived life like this, it is not suddenly going to be a change it’s just getting used to the fact that I will never be any different and now learning to manage.

I have always had Limitations in my life but i think the key point of this story is that life does not have to stop because you have something wrong with you, something different about your body or a learning difficulty. I think we should look at people like Johnny Peacock who is currently on strictly at the moment, which I am addicted to! He is by far the man I am routing for and probably my hero! He has really shown anyone with any disability that there are no limits, thinking of his determination and grit really inspires me! I love going out and doing as many normal things as I can and do you know what makes me so lucky is that you would never know I have these lumps, bumps and ailments unless I told you.

Before I met my lovely Lewis, life was hard as I used to think my disabilities had stopped me from being attractive to any man, I used to meet blokes and feel like this lack of confidence showed and they knew something was wrong with me. Being a teenager is a tough time anyway, the comments and bitchiness is rife enough as it is but having something slightly different with my body made this so much harder, it also made me the person I am today and we lead a good fun lifestyle where we probably drink too much but life is for living so let’s go and live it ailments and all.

I intend to live as much of a normal life as I can and not let either of these diseases get me down, even though it does. But you need to surround yourself with good people to pick you up on times like this and have some fun. My boyfriend always says to me smiling releases a chemical that is proven to make you happy, I often find wine helps too 😋🍷🍾

I love my job and have met many inspirational, brave and amazing young people along the way, I do find that they keep me going and days where I feel a bit down I think I am so lucky to have my job teaching music to young people as they really lift you up (the majority of the time!!!) and some of them go through harder times than I can ever imagine, yet they go through it with dignity, bravery and a smile on their face.

I just hope I can manage this new disease well and give myself the best life possible rather than laying in bed recovering from an attack on my immune system from this horrid disease. It can feel quite lonely when you go through these things so I wanted to share my story with you all in the hope that you can relate and smile and join my journey,

Amy x